Privacy information for patients participating in our research studies

Information for patients participating in our research studies

The Section of Epidemiology & Biostatistics is a research department within the School of Medicine of the University of Leeds.

The Section conducts research projects which explore genetic and environmental factors that may influence the risk of developing disease and the likelihood of surviving it. The diseases we research include malignant melanoma, colorectal cancer and testicular cancer. In order to conduct our research we collect and process data in electronic databases and paper filing systems. This data is considered to be personal data according to the EU Directive 95/46/EC and implementing laws in the UK (2018 Data Protection Act).

To learn a little more about some of the melanoma related research that we have undertaken you can visit our website via these addresses – http://genomel.org/info-for-patients/research-in-leeds-2/ and http://genomel.org/info-for-patients/%ef%bf%bcplain-language-summaries/#contentjump.

As results become available we will update the Plain Language Summaries, and we are always looking for feedback from participants to improve the quality of those summaries. Contact Professor Newton-Bishop on j.a.newton-bishop@leeds.ac.uk with comments.

What types of personal data do we process?

We process the following types of personal data under articles 6 and 9 of the Data Protection Act 2018 on the legal basis that it is ‘In the Public Interest’ as our research is designed to help individuals make choices about how they may reduce their risk of developing certain diseases or improve their likelihood of surviving them:

  • Health related information obtained directly from people participating in our research.
  • Health related information about people participating in our research which is obtained from healthcare providers which, depending upon the research project can include laboratory data, genetic sequencing data.
  • Health related information obtained from government data providers such as NHS Digital and Public Health England and other research organisations, provided that we have obtained written consent from participants.

Why do we use personal data?

As a university we use personal data to conduct important research to improve health, care and services. When people agree to take part in our research projects, we use their data in the ways needed to conduct and analyse the research project. Each research project is different and a detailed information sheet is given to people who are considering taking part in our research projects which includes details of the types of data we will collect, how it will be used and who will have access to it.

In general, we process personal data:

  • To help identify and recruit eligible participants into our research studies
  • To correctly track those research participants who have consented to take part
  • To correctly Identify samples and data donated by participants
  • To collect and clean data for use in statistical analyses in the conduct and interpretation of our research projects
  • To satisfy other ethical, legal and regulatory requirements which apply to the conduct of our research projects

If you would like to know more about the contribution that people make when participating in our research projects and how personal data is used by universities and the NHS to help improve treatments and healthcare services this video provides more information: https://www.datasaveslives.info/

How do we protect the personal data that we hold?

As a publicly-funded organisation, we ensure that it is in the public interest when we use personal data from people who have agreed to take part in research and that these research projects are approved by a research ethics committee.

We only use the minimum personally-identifiable information possible and ensure that this is held securely with strict arrangements about who can access it. As soon as data collection is complete we normally destroy the identifiers: that is that we de-identify the information we hold. The length of time that we hold identifiable data depends upon the nature of the study, so for some studies, the identifiers (names for example) may be removed as soon as we have performed quality checks on the data. For other studies where we are carrying out research into long term risks eg of different cancers, then we would need to keep those identifiers (names, dates of birth or NHS number) for many years, in order to seek information from Public Health England.

Who has access to the personal data that we hold?

Authorised people within the University of Leeds who are working directly on our research projects will be given access to personal data but it will be limited to what they need to access to undertake their role.

Each research project is different and more detailed information about data storage is given to people participating in our research projects when they decide to take part, about how we include the types of data we will collect, how it will be used and who will have access to it.

If we have sought your permission to access and receive information about your diagnosis, previous health conditions, treatment, progress, and (in the event of your passing away for whatever reason) mortality information held in your NHS medical records by the Office of National Statistics, Cancer Registries and other central NHS registers (such as Public Health England or NHS Digital) personal data will be shared with these organisations. To be able to identify your medical records from these bodies, we will securely transfer information about you, including your NHS number, date of birth and Study ID to allow your records to be located. These bodies will then return to University of Leeds information from your medical records using the Study identification number. Data supplied by these bodies will relate to your health changes over time and we will do this for a variable length of time following your participation in the study. The duration is normally up to 20 years but very occasionally eg studies of inherited susceptibility to cancer the period of time can exceed 20 years. We will not do this step if you have withdrawn your consent from participating in the study or if you have not consented to your records being accessed and if you decide at any time to withdraw from the study we will cease accessing your records on receiving communication from you to this effect.

Additionally, in order to conduct our research properly we are required to report certain information to the following organisations. This information however will contain data which has had personal identifiers such as name and date of birth removed:

  • Health Research Authority Ethics Committee
  • National Cancer Research Network
  • We publish the results of our analyses in scientific journals and produce lay summaries of these for our web site, however these do not contain any identifiable information.

Do we use personal data for other purposes?

When people agree to take part in a research project, some of the data that we collect may be provided to researchers running other research projects both within the University of Leeds and in other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. This data is only used to conduct research in accordance with the UK Policy Framework for Health and Social Care Research and this is done to maximise the value of data collected for the greater good of cancer patients. This information will not identify you and will not be combined with other information in a way that could identify you. The information will be used for the purpose of health and care research and cannot be used to contact you or to affect your care. It will not be used to make decisions about future services available to you, such as insurance. We always specifically ask participants for their permission before we share any of their data with these other agencies. You will always have the right to withdraw from this part of our studies even if you have previously given consent, you can later change your mind without that affecting your rights or care. If you do withdraw from this or any part of the study you are taking part in you can request that we destroy any data and/or samples you have donated up to that point and we will endeavour to do that. This, however may not be possible after data has been used in a publication.

Where can you get further information?

If you have taken part in any of our studies you will have received a detailed participant information sheet. This information sheet describes precisely what personal information we collect from you, how we process that information and how long we keep it for. It also details how you can notify us of your desire to withdraw from the study and how you can request that we destroy any of the information and/or samples you have given us, if that is possible. If you wish to contact us to discuss aspect of the study you have taken part in or you would like a copy of any of our information sheets and consent forms please email c.l.r.walker@leeds.ac.uk. Follow the link below for further information regarding freedom of information requests: http://www.leeds.ac.uk/info/130521/freedom_of_information.

How do we deal with complaints?

If you wish to raise a complaint on how we have handled your personal data, you can contact our Data Protection Officer who will investigate the matter. If you are not satisfied with our response or believe we are processing your personal data in a way that is not lawful you can complain to the Information Commissioner’s Office (ICO).

Our general postal address is University of Leeds, LS2 9JT, UK.

The postal address for data protection issues is University of Leeds, Room 11.72, EC Stoner Building, Leeds, LS2 9JT

Our Data Protection Officer is Adrian Slater and you can contact them at a.slater@adm.leeds.ac.uk

The University of Leeds is a registered Data Controller with the UK Information Commissioner’s Office (registration number Z553814X).


Page last updated 16th February 2019